She didn’t want to bother anyone

Last week a patient on my ward was discharged home and I went up to the ward to go through the medicines with her. She was going back to the care of her dedicated daughter who was there to hear all about the medications changes. The patient, despite being in her late 80s, was still sharp and with it and until only a year earlier had looked after all her medications herself, which is very impressive.

I admire patient’s who take the initiative and really get to know their medications and take charge of their own health. It just adds another layer of checking to the medication system which can be vital.

So I sat down with the daughter to educate her about the current medication regimen, with the patient listening in and nodding.

And although I was there to teach, I learnt a whole lot!!

First medication. The dose of prazosin has been reduced to once a day rather than twice a day as it was when she came into hospital, I say. Why has it been reduced when she’s had high blood pressure while she’s been in here? she asked. Well, I was taking over from another pharmacist and didn’t know the answer. Did she know what the blood pressure had been, had she seen the chart? I ask, stalling. No but she just knew that it had been. So I get the obs chart which shows an occasional reading of high blood pressure, maybe one in 5 or 6 so I explain that treating those one off higher blood pressure readings to bring them down to normal would put her mother at high risk of low blood pressure the majority of the time, which explains why they dropped the dose. But the kidney specialist put her on that dose, she says. I understand that, I say, but blood pressure changes and so the dose has to be changed to adapt; I’m more than happy for her specialist or GP to change the dose at the next appointment if that’s appropriate. Oh well, it was probably just high while she was in hospital, they’ve treated her horribly, I’m told!

This is always a big disappointment to hear, because I’ve gotten to know a lot of the nurses on this ward and I’ve seen how they care for their patients, even the difficult and hard patients. This patient was easy and lovely so I find this hard to swallow. I’m not saying that awful patients are treated worse, but I’m saying if the nurses can do their best for stressful patients, I’m sure they would have given outstanding care to this sweetie.

Really? I ask, surprised. Oh yes, she nods, and her mother, the patient, nods. We’ve had the most terrible time while she’s been in hospital! Well I’m very sorry to hear that, I respond. Oh it’s not your fault dear, I shouldn’t have mentioned it.

Second medication. This is the anti-fungal cream that we’ve been applying three times a day to your mother’s groin (sorry people, TMI) to treat the rash, I start. Oh yes, do you know that those nurses left her in a wet nappy overnight, for 8 hours?? How terrible is that, she asks me, starting to wind up the tone and intensity? Really? I ask again, because I just find it very hard to believe. The patient nods, yes that’s what happened. Well I’m very sorry about that, I say, that shouldn’t have happened. I wonder out loud to the patient, did you tell the nurse about it? No, she shakes her head. The daughter chimes in, she doesn’t like to bother anyone.

For serious???

You are complaining, and I find out later that there’s an official complaint, or rather several official complaints, about wrongdoing by the nurses but you just sit there and let it all happen when you have a mouth that you are fully capable of using, and a hand to press the buzzer, and surely a desire to not sit in urine for 8 hours just for the sake of not using your voice or your hand!! I find that ludicrous, and really, unacceptable. This isn’t about victim blaming by the way, the incident happened no doubt about it, but it’s about why it shouldn’t have happened and it could have been prevented.

We have patients that can’t speak, or can’t put their thoughts into coherent speech, or can only make sounds, or who take what feels like forever to get the words out. We have patients who are immobile, paralysed, unable to move their limbs, or unable to know what to do to get help. She ain’t one of them!

I don’t think anyone likes to make a fuss, or a scene, or a big deal, or call attention to themselves, complain or whine. Maybe the odd person. But this isn’t about that. This is about bringing attention to an issue that needs to be fixed for the sake of your health. You aren’t putting someone out, or bothering them, the nurses are there to help; that’s their job! If they have something more pressing to do, they’ll let you know and come when they can. But the 8 hours overnight that she stayed in that wet nappy are the quietest hours in the hospital. Often nurses don’t have much to do other than be on call for patients…so call them!

Again, not victim blaming but a patient has to take responsibility for their care. If the nurse doesn’t know the nappy is wet, she won’t come and change it for a dry one. You aren’t a baby, your parent doesn’t come along and stick a hand down your pants into your nappy to check if its wet; it’s not someone else’s job to come by every 20 minutes to ask if you need a change. You’re an adult. You tell someone when you need something, right? No, apparently not! And this was only the start of it…

Medication number three. Trying to move along and get past that one. Codeine has been stopped while your mother has been in hospital, I start. Yes I know, that’s why she’s been in pain the whole time she’s been in hospital, she counters. Oh my, here we are again! Who leaves their mother in pain for 8 weeks instead of saying something? Who doesn’t speak up for themselves when they’re in pain? Oh I didn’t want to make a fuss, says the patient. Give me strength!! You either weren’t and aren’t in pain because if you actually were and are you would be begging for help, or you are competing in some martyr awards that I haven’t heard of! You don’t sit there in pain and not say anything. Do you? Am I on the right train here? Well, codeine is not the best pain killer, I try to continue, and we weren’t aware of any pain. She certainly hasn’t requested any pain relief. And I think, although nurses, doctors and allied health staff may be brilliant, we still can’t read minds! Surely anyone can see that making an official complaint about a patient being denied pain relief when no one knew that the patient was in pain isn’t quite logical!! And don’t tell me that she was never asked if she was in pain. It’s a rehab and geriatric progress ward, every pain is continually asked about pain, about their bowels, and obs are taken regularly. It all seems so unnecessary!

Well, what a way to start the day! I did get through the rest of the meds eventually, but I was ready to get out of there!

Didn’t want to make a fuss, didn’t want to bother anyone, didn’t want to get in the way, didn’t want to be a burden. I get that. Sometimes it’s hard to speak up when you need something. But you can’t have both sides, not speaking up AND making official complaints against care givers. I believe in the complaints process and wouldn’t discourage anyone from making a valid complaint. But this feels like making a scene over something that could have been nipped in the bud at the start. It feel like an attack on the nurses who try their very best, and who couldn’t have prevented any of it without the patient doing their part.

So maybe its something more people need to know about – for your own health’s sake, you need to speak up. Don’t wait til discharge to complain about problems when you never did your side of the job in speaking to your nurse during your hospital stay. It’s a two way street, nurses aren’t psychic so you need to tell them what’s on your mind. Is it too much to ask?

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I did a bad thing…

I did a bad thing.

I got sick, and then I started getting better, then I stopped. I didn’t get better. I just stopped.

I’m in illness limbo. I’m much better than I was when I was severely unwell, but much worse than I was “before”, before I ever got sick. Well okay, maybe not much worse, but worse. I’m not going forwards, I’m not going back. I’m not bad enough to complain to my doctors, but I’m not where I thought I’d be, back to “normal”.

It’s been a long time now since I got sick, and I’m definitely well over the acute phase of crippling anxiety, black depression and the odd weirdly happy and effective days of mania.

I was just commenting yesterday that I never have dysfunctional anxiety anymore; just regular, everyday person anxieties that are reasonable and well founded and manageable. But I was wrong. At that very moment it was sneaking up on me again and bam! it got me!! But only a bit dysfunctional. I don’t have the darkness and hopelessness of depression, just the sluggishness and lack of motivation and tiredness…but even that waxes and wanes giving me better days and worse days due to no particular reason. Mania continues to be a little brightness on the horizon that breaks through any residual depressive effects and gives me a little happy and useful and wish-I-was-like-this-all-the-time day or so, here or there!

I’m medicated like you wouldn’t believe, and a recent experiment my psychiatrist and I tried of reducing my meds has shown me very clearly that without these meds, I’d be right back in the thick of my acutely unwell stage!! It’s not like they aren’t working; they are, they really are! My moods have been a very difficult case to crack and it has taken 4 medications for mood and months to years of appointments to get on top of the main symptoms. And they work. I can, somewhat distantly now cos it’s been a while for some, remember how I was before and after starting each one, which may just be my saving grace down the track when I, like every bipolar patient, get to the stage where I think I might just be better off not taking my meds. One request of you, friend: don’t be the person who suggests I should go off my meds. The consequences of taking on that responsibility may well be more than you can bear. You take my life in your hands if you suggest any such thing. For all I complain about where I am, I always know very clearly that I would be so much worse off without my meds. No question. Ever. Life isn’t perfect but taking away the crutch holding me up isn’t going to help. So save it, keep it, sit on it, hold it in, swallow it; you are not helping anyone, almost ever, by making any such suggestion. You are warned.

But here we are. I’m not sick, but I’m not as well as I thought I’d be. As I hoped I’d be, planned I’d be, “knew” I’d be. Isn’t this the dilemma of every patient with a chronic illness? I go to the doctor with my illness, the doctor says okay I’ll treat your illness, I hear “I’ll get you back to normal”, and go on my way happily ever after. I think I’m presenting the doctor with a chest infection that he can fix, and then return me to my previous health. But this is not a curable disease. The treatment works, the doctor says I’ve treated your illness, I look forward to getting back to being me, my old self, and then, as the Goons would say…suddenly, nothing happened!! Yes the treatment worked. Yes the doctor has done his job. But this illness doesn’t go away. Because that’s not how it works. The illness stays. The treatment stays. The illness has just been put back to bed for a while. But there are some residual effects that haven’t been buried and they remain and irritate me. Because that’s how it works. I don’t know what it would take to get every last little bit of it under the surface…I don’t think I want to know because it either isn’t possible, or the trade off would be too severe.

I’m starting to think “normal” isn’t a reality that I’ll ever reach again. I’m starting to think that my life has been permanently changed. I’m starting to think I’m stuck here.

I don’t know.

All I know is I’m here, and everyone seems to want me to get fitter, healthier, stronger, slimmer or shall we shall less large (keeping it to reachable goals), more energetic, more involved in my own life, more something or other. And don’t mistake me, I want that too. I want it all. It’s just that I can’t see how. I can’t see how to get there. Some people say, well you made it this far through, I’m sure you can do it. But my little/big secret is, all I did so far was hang on. Through all of it, I didn’t really do anything that active; I just hung on. Now the goals require something more active and I don’t know if I can do it. I’m not sure that I can do what’s required. I guess that’s why I’ve stalled here. The next step possibly requires more than I can give.

Aaaaahhhh. Sigh. I did something bad. I stopped getting better. Can I start again?